Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Sharmin on February 28, 2009, 09:06:15 PM
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Our doctor told us that he would like to start the rituximab ASAP, because the antibody is creeping up again. He thinks that it is better to hit the antibody while it is slightly active rather than waiting until it gets strong again (and we would be back to square one).
During rituximab treatment (4 week course) we are warned not to use any supplements. For how long after should we avoid the supplements such as vitamin E. Also, which supplements should be okay to continue using throughout the course of the treatment?
Thank you,
Sharmin
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Sharmin,
Good luck with the treatment dear,i hope this will be the last rituximab treatment for little A and he'll get rid of this antibody :hugfriend .
Be strong we are here for you :hugfriend.
Zaini.
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Zaini,
Thank you so much dear - your caring and support is what has gotten us through everything so far :hugfriend :hugfriend
Andy,
We are also registering the kids for soccer during the spring and summer - do you think that it would be okay for him to play soccer during this treatment?
thanks again,
Sharmin
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Sharmin
Has little A got an symptoms of active antibodies (hemolysis)???
What i know, is that antibodies (once existed) will always be in the system, but the treatment is supposed to get rid of the symptoms only which is our target. Please correct me if i am wrong
you are in my thoughts :hugfriend
manal
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Hi Manal,
The time between his transfusions is beginning to shrink, and it appears to be happening for a while now. They also determined that his transfusion requirement is still too high while we were in Oakland. Ideally, 14-16cc/kg of blood should last him 4 weeks - currently 20cc/kg is lasting him 3 weeks. Also, the incident last month when his hg dropped to 69 was an indication that the antibodies are becoming active.
The antibodies were not showing up during the first few months after his ritux treatment but they are starting to show up now. The determined in Oakland that a second dose of rituximab may take care of the problem - our doctor here believes that if we hit him right away - before the antibodies become too active may eliminate them completely - especially because he will only receive dna matched blood now (after the first treatment he continued to receive mismatched blood for a few months b/c dna info was not yet available). Vitamin D supplements may also have with this - by regulating his immune system.
I am a little nervous - but hopeful.
Thank you Manal for your continuous support,
Sharmin
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I am happy to know that the second treatment could eliminate the antibodies. :pray :pray
Sharmin, little A is a strong boy and he will do just fine, i am sure of that. Please it is so important that you are calm from inside to reflect this on him
Please be sure that we are all by your side and always praying for you
You are a wonderful parent who makes the best decsions for your son, be sure of that :bighug
manal
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Manal & Zaini,
I love you guys :grouphug
Sharmin
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Hi Sharmin
Good luck with the rituximab. Hoping that this will resolve his problems for ever and little A never has to deal with antibodies again.
loads of wishes and health
maha
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Maha,
Thank you so much - your prayers and support mean so much to our family :hugfriend
I hope for the best for all of our friends,
Sharmin
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Sharmin,
How soon will little A be getting the vitamin D therapy and is it possible to wait until that is completed before trying rituximab again? Vitamin D is an important immune system modulator and little A did seem to be doing better before winter when he had more exposure to the sun. Of course this was also closer to the time he had the ritux. It would be good to see if correcting the vitamin D deficiency has any effect on the immune system's own ability to regulate itself.
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Thanks Andy,
Our doctor is waiting to receive letters and test results from Oakland. He is also doing a vitamin D test next week to see where our starting point is and if there is any change since last year.
I was also thinking that vitamin D, nigella and colostrum need to have a chance as well. I will talk to his doc next week.
Sharmin
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Sharmin,
Is selenium among the minerals that little A is taking? It is an important mineral needed in trace amounts and it works with vitamin E to boost the immune system. Dr Vichinsky did mention this in his talk in Dubai, and I wondered if it is something he recommended to you.
As far as when he can resume supplements, you need to ask Oakland. Is he not allowed any supplements during the treatment? And with soccer, how was he during the first treatment? Were sports feasible then? If he does play, pay special attention to keeping him well hydrated during activity.
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Hi Andy,
The docs in Oakland wrote a letter to our doc here - and she said that she was going to list all of the trace minerals that he needs in the letter. She mentioned to me that thals are prone to zinc, copper and selenium deficiency. She said that the high chelation is making little extra prone to these deficiencies. I will remember to ask during our appointment.
Currently he is not getting any selenium in the supplements that I am giving him. Should I give him copper and selenium as he is getting zinc. Also, do you know how much a 27kg child should be getting of each of these supplements - or would that depend on how deficient he is?
The indications that come with rituximab indicate that he should not have vitamin e, garlic supplements or blood thinners while being treated with ritux. Last year I discontinued all supplements during his treatment (with the exception of vitamin C). This time I will not give him vit e - but I plan to continue all of his other supplements - especially cal/mag/zinc/vit d/vit c/bcomplex/colostrum/nigella. I will also ask Oakland to see what they recommend.
In the summer he was quite sick because of his reaction to the 24hr ivig - and the nausea and headaches from this continued for several weeks - so he was out of commission for a while - I don't think that the ritux itself caused him to be sick but it is hard to know for sure. When he is feeling well he rarely sits still anyway so we thought that he would be okay to play during the soccer season. Also, this may prevent him from getting depressed due to all of the hospital visits (he will have to continue ivig now because of the ritux, plus the transfusions). He did experience some bruising with ritux last time - but we had stopped the vitamin C for a while - and once you told us to resume with vitamin C his bruising stopped. We will be sure to keep him hydrated and perhaps base it on how he appears to be doing.
I was hoping that we wouldn't have to do this again - but hopefully if this is done now it won't ruin his summer holidays again - and his transfusion requirement can decrease soon. We are in a better position this time because his iron levels are already lower. I must be so hard to understand because my thoughts are everywhere...
Thanks again,
Sharmin
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Sharmin
Osteocare chewable has this trace elements:
Copper, Selinium, Manganese, Boron
http://www.worldwideshoppingmall.co.uk/body-soul/osteocare-chewable.asp
Calcium 800mg (100%RDA), Magnesium 300mg (100%RDA), Zinc 10mg (67%RDA), Copper 1mg, Manganese 0.5mg, Selenium 50ug, Vitamin D (as D3 200IU) 5ug (100%RDA), Boron 0.6mg
Andy
It is said in the ingridents that vitamin D is
Vitamin D (DL-alpha Tocopherol, Cholecalciferol),
So is the dl -tocopherol here is bad as it is in the vitamin E. I know that vitamin D has to be synthesied because the natural source is from the sun, but do you think that a continous use of it from artificail source will be harmful on the long term???
manal
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The DL-alpha Tocopherol listed is vitamin E. The Cholecalciferol is vitamin D. I don't know why they choose cheap synthetic E but it's usually a cost saving move. Perhaps the company can explain why they choose to add synthetic E to an otherwise fine product.
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Andy, but since they didn't mention that it has vitamin E (not every one knows that DL-alpha Tocopherol is a vitamin E), i suppose it is in a very low quantity. What do you think??
I think i will email them about the quantity of vitamin E in order to reduce my son's daily total intake
manal
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Hi Sharmin
I hope that with the treatment this time you get rid of the antibodies for good.
Take care
Jade
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I do think it must be a small amount of DL-alpha Tocopherol included because it isn't listed by percentage. It may just be a vehicle that the D is attached to. Small amounts of Dl won't cause harm. My doctor said don't take more than 100 mg of synthetic E daily.
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Hi,
As far as i remember Sharmin is using Osteocare liquid which does not contain any trace elements.
And this DL-Alpha thing,it isn't mentioned on the company's website,be it Chewables or liquid .Liquid description is ,
Formula
Nutritional Information Average Per 2 Teaspoonfuls % RDA
Calcium 300 mg 38
Magnesium 150 mg 50
Zinc 6 mg 40
Vitamin D 3.8 mcg 76
Chewable contains:
Formula
Nutritional Information Average Per 2 Tablets % RDA
Calcium 800 mg 100
Magnesium 300 mg 100
Zinc 10 mg 67
Vitamin D3 5 mcg 100
Manganese 0.5 mg --
Selenium 50 mcg --
Copper 1 mg --
Boron 0.6 mg --
DL-Alpha is mentioned nowhere,i don't know why this other website has mentioned it ??? .
Sharmin i think you can switch to Chewables as it contains trace elements.
Zaini.
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Thank you so much for your message Jade :hugfriend I hope that this treatment eliminates the antibody too.
I think that I will order the chewables too, I am a little concerned about the vitamin e issue?? I will also look at a local health food store and see if I can find a comparable product that also includes the trace elements. The lady that owns the store is extremely knowledgeable.
I will let you all know what I find out. Also, we have an ivig and an appt with our doctor this week to discuss our results from Oakland - at that time we can also find out what vitamins they recommended and how much of each.
Sharmin
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Rituximab, I am sure I have read it before. I think that I signed a petetion to get r. under insurance in UK. Isn't rituximab used by AA or Black Diamond Fan? I am sure I have heard of something before or those two medicines have the same last letters. :dunno
Nevertheless: I wanted to say that I hope this treatment will eliminates the anitbody & it will work a bit fast.
Dore
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Rituximab, I am sure I have read it before. I think that I signed a petetion to get r. under insurance in UK. Isn't rituximab used by AA or Black Diamond Fan? I am sure I have heard of something before or those two medicines have the same last letters. :dunno
No, I was wrong. this medicine is called: PNH, een weesziekte; eculizumab, een weesgeneesmiddel" PHN, a orphan disease; eculizumab a orphan medicine (PNH=paroxysmale nachtelijke hemoglobinurie, English = http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria .
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Thank you Dore :hugfriend
My friend's daughter has Diamond Blackfan.
Sharmin
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Sharmin,
Goodluck for the treatment. Hopefully LittleA can say Goodbye to the antibodies forever.
- Bostonian
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Thank you Bostonian, I hope so too.
Best wishes to your little one too.
We look forward to meeting you in New York in the fall,
Sharmin